After suffering from (so called) severe CFS since I was 16 years old, I had conceded that I may never really discover the root trigger/cause of my overnight onset illness after so long.

I focused instead on doing everything I could to heal -regardless of the exact disease. Because my umbrella term diagnosis of ME or Chronic Fatigue Symptom just never cut it and meant very little. It is too vague, too wide, too open, and when you have done all the Nutrition, Supplement, Lifestyle and Healing work consistently and intensively – with some -but not nearly enough improvement – you just know (in your heart) that there is something major at the core which is being missed.

That constant niggle bubbles and builds until the trust in your own powerful intuitive makes it so blindingly obvious, that all doubts ceases to exist entirely.

Many of us (long term sufferers) are battling and debating continuously with every Doctor, Healer and Helper we come across. They may offer some value and they may not. Never is it enough.

We believe fully in a Mind, Body and Soul connection. We KNOW the power that our beautiful bodies have to heal. We do it all. And more. Much much more. We have done for years. Maybe decades.

We value this Wellbeing Path and take pride in our steps. We may even enjoy the endless and never ending research which makes us feel qualified to add letters to our title.

DR Carly if you please.

Friends come to us and we guide them to better health. They notice the results that we ourselves don’t. We know this works and that we all need to take responsibility for our health and happiness. Do the work. No excuses. Reep the rewards.

We credit ourselves with just HOW FAR we have come. A long way from the days (months and years) of being completely bed-bound and utterly terrified. We praise ourselves for how much WE have stopped a potentially devastating tide from overwhelming us entirely.

We are strong (even amongst the fear and frustration) and we have immense faith. It keeps us going.

And yet whilst we appreciate getting to a safety zone we are flummoxed as to why we are not getting any further? Why we may be out of bed (much more) but don’t leave the house too often. Why we still feel so unwell and exhausted.

We have long forgotten what ‘being well’ would feel like. We dream of it but we cannot ‘remember’ it any more. Perhaps there are odd glimpses which we try to hold onto but they slip away too soon to build a memory or create a feeling.

That illusive pot of gold at the end of the rainbow. Always there but never within reach. That is where we are heading in our plans and our dreams.

Towards the light at the end of the tunnel. We know how much we will appreciate Health.

Better than any gift imaginable.

The Glitter of Wellbeing always in our vision whilst we try to appreciate all we can in the NOW, day to day, despite it all.

Happiness can still be enjoyed. Laughter still to be had. A Smile still authentic.

But impatience lingers at the edges….

We could do and be so much more. When will our time come?

Deep down we just know there is more going on physically. That we need to dig deeper and deeper with tools we ourselves just don’t have. Our hands already red raw and scratched. We need outside help to work with us now. We have given, and continue to give this our all. Our dedication will pay off when the main body burdens get diminished.

And what are those burdens exactly?

They could be different for everyone. That is part of the problem and why you much always be the main health advisor in your own life. You must learn to KNOW YOURSELF to get well and heal. Trust your intuition. You must be sure of your exact picture and not swayed by the constant conflicting opinions you come across.

It takes a lot of Time. A lot of Tears. A lot of Effort. A lot of Strength.

You need to work backwards, layer by layer until you reach a point of better health. Some of us need to go right back to the Foundations whilst others only a layer or 2.

Is your CFS caused by a Virus?

I mostly write for the ones who have already done SO MUCH but still need answers, because I believe that we can heal, and this is my destination. I know myself I cannot find many recovery examples, and so I deem to be that example myself. An immense challenge I know – but what alternative is there?

Im not even talking about being 100% – what (and who) is that anyway? I know YOU understand when I say that “I just want to feel well and have some energy to be myself.”

Light words but ones which chronic CFS sufferers will know the magnitude of.

I dream of waking up, getting up, getting washed and dressed, having breakfast and leaving the house for the morning/day.

A massive vision for us. A daily reality for most.

If you (like me) have done all the ‘work’ then perhaps there is a Virus at your root cause? If you have done the years of Lifestyle changes, the Rest, the Nutrition and treated the Insufficiencies. If you have sorted (or tried to sort) the Hormones, the Gut, Methylation issues, and the Toxins, and you are still in a major muddle then perhaps something is complicating the whole picture. A Virus may just be the major body burden (and trigger) which is dragging the body and Immune system down so much that nothing can properly heal and function beyond a certain point.

As you know, I was diagnosed with Parvo B19 Virus a few weeks ago (after 18 years of CFS) and for some reason my body is not able to make Antibodies to fight it. All the work I have done and continue to do cannot change this fact. I cannot make Antibodies and therefore I cannot fight this Virus. Fact.

I will need Antibody Therapy (if I can get it) to do this.

Part Relief – That I cannot blame myself further. That I can fully believe that I have done all I can to get well, and that my lack of (further) progress is not because I could have done more. That in fact all my efforts have probably stopped a major deterioration.

Part Apprehension – That I cannot fix this by myself. That this is out of my hands to an extent. That I still don’t understand why my immune system is not functioning? More questions. More research needed.

There are mixed emotions but I am holding tightly onto my friends Joy and Gratitude for the new possibilities and hope this diagnosis brings.

Next time I will be writing about how Parvo attacks the Endocrine System and how having Thyroid and Adrenal problems has massively complicated my own system/healing.

I would love to hear from you. Do you feel like there must be a hidden root cause for you too? Have you found it?

Hi,
You sound similar to me. I have a positive PCR and negative IGM. Just waiting on IGG to see if I ever produced antibodies at the start. It would be good to keep in touch – let me know how things progress re tests and treatment. Are you hoping to get IVIG therapy?
Thanks Carly

Thomas

October 15, 2014 at 11:53 am (3 years ago)

Only recently did my symptoms become problematic. Judging from your photo I am somewhat older than you, so you have been dealing with this for a greater part of your life. 🙂 Recently found bact. pneumonia in one lung, which has apparently been there for a while and probably is a result of the viral infection I a carrying. More blood tests to come.
Keep up the good work.

GERLINDA FRIDAY KUMER

October 13, 2014 at 5:27 pm (3 years ago)

How did you get the test for Parvo? Did you suggest it to your Dr or did he/she hear about it and offer it to you? I do know that at the time I got sick,July 2001, I thought it was a bad flu,but I had neuro symptoms as well, and an unsympathetic husband, so I doctored myself at home. Weeks later I tested pos for Epstein-Barr with IGM antibodies. I was off work for almost 1 yr. I went back to work part-time. I was left with an insidiously developing CFS/Fibro.

Hi,
Its taken 18 years to get anything positive show – other than thyroid/adrenals etc – so not been easy. I am working with a great consultant who luckily ‘thinks outside the box’ but it certainly would not be considered by a GP sadly. I did pay privately for the test through TDL London Labs. He knew I had a virus at the core and has just kept trying things as weve gone along really – but the hunt can be like a needle in a haystack. Glad you got back to work part-time but hope you can keep improving xx

Dana Potter

April 26, 2016 at 5:21 pm (1 year ago)

I was ecstatic when I stumbled upon your blog. Sorry that someone else had suffered as I have, but relieved that there is someone out there that understands. I’m not alone. Not only that, you just helped me pull in that missing element in my illness. Three years ago I came down with the worst flu bug of my life as well. I couldn’t shake it. My ANA came back a weak positive so initially we thought Lupus was the culprit. Later ANA results came back negative. I bounced back and forth between Primary Physicians for a bit trying to get answers, and then one tested me for everything under the sun. That’s when the Parvo B19 showed itself. Unfortunately it was not fully understood what that could mean. I did not follow up on that because I thought I had just contracted a child hood disease because my immune system was beat down. I was tired of testing and ignored the advisement of going to a Rheumatologist to get to the bottom of the problem. I had no idea that Parvo could still BE the problem until I was so worn down the other day and I googled something to the effect of “Flu virus that will not go away” and BING… I found you… my angel in disguise. For the first time, I actually had found someone who had felt the exact way that I have. Well, I had already made an appointment with the Rheumy before I stumbled upon this golden piece of knowledge. I have printed so much info to take to my doctor next week and I just pray that we at least get to the bottom of this miserable condition and get me on the right treatment path! Thank you so much for sharing your story Carly!!

Wow Thankyou. Incredible isn’t it how much we can miss especially with so little help and guidance. My journey has evolved somewhat further as I began to additionally question why infact I still have Parvo Virus in my system? yet no antibodies to fight it. Eek – it opened up a whole new world of infections and virus’s and microbials – namely the likely possibility of Lyme and Coninfections. Its daunting to say the least but like you at least answers and clues are appearing. You may also want to dig deeper – feel free to read more of my Lyme stuff – which is just beginning. If you type ‘LYME ‘ in my search engine it may bring up a few posts. Ive very much still in the murky midst of it all as treatment is not simple when you are long term sick….

Please do let me know if the Rhematologist helps at all. I also have positive ANA at times and Lupus has always been a consideration. I now believe its all linked really and that infections – or maybe parasites, bugs or whatever are driving it and the system is just so overloaded – so we have to backtrack ever so carefully. I can see now this whole picture which so many people are in – it frustrates me that the medical professional are just not putting it together. I am due to see a Rhematologist again too – even though I generally now avoid nhs appointments as never feel they help – only stress me with further syndromes which I seem to collect. But in the past he has only offered drugs I did not like the sound of and suggested IVIG therapy – which is controversial even if you can get hold of it 😉 … Put it this way Im still on the hunt. Lol.

Im sorry you are suffering too but I am genuinely so happy you like my blog. That makes it worthwhile. Thank You so much. Please do keep in touch and update me won’t you?

Copyright owned by Carly @carlyjennings.co.ukDisclaimer: This Website and all the information which it contains is based on my own personal experience and health journey which I am sharing for educational and informational purposes only. Please consult your own doctor or healthcare provider to determine the best course of treatment for you.